Welcome, Guest. Please login or register.
March 19, 2024, 07:09:21 am

Login with username, password and session length


Members
Stats
  • Total Posts: 772787
  • Total Topics: 66296
  • Online Today: 290
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 4
Guests: 221
Total: 225

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Do I Have HIV?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Formal complaint about the CSI connection  (Read 41611 times)

0 Members and 1 Guest are viewing this topic.

Offline lydgate

  • Member
  • Posts: 1,022
  • Virgin, can't drive
Re: Formal complaint about the CSI connection
« Reply #50 on: February 17, 2007, 02:42:25 am »
Hi Jay,

This thread is about the temporary CSI forum. 

How does this have anything to do with passports or entry into the United States?

Wesley

Because this thread is not simply about the temporary CSI forum; it brings up a host of other issues as well. As the original poster, Cliff, points out -- as do many others -- it's about privacy as well. 'Nuff said, again. (And I'd like to add that I understand and appreciate your comments on the Internet being a public space.) If you want to continue this conversation, PM me.

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Formal complaint about the CSI connection
« Reply #51 on: February 17, 2007, 02:48:50 am »
Jay,

There are a host of issues involved, but residency isn't one of them!

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline northernguy

  • Member
  • Posts: 1,347
Re: Formal complaint about the CSI connection
« Reply #52 on: February 17, 2007, 03:23:15 am »
Given that many people are struggling with disclosure issues, I am surprised that advance warning wasn't given for people who may have wanted to remove their avatars etc.  What if you were just inadvertently "outed" to CSI watching coworker?
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Cliff

  • Member
  • Posts: 2,645
Re: Formal complaint about the CSI connection
« Reply #53 on: February 17, 2007, 06:02:57 am »
I've watched a transformation both in myself and in the forums.  When I first arrived I didn't use my real name.  I never had a picture up.  I didn't say a whole lot about myself, outside of my disease.  Overtime I became comfortable that this was a safe place and I could be more open about myself without fearing that someone would find out my status.  I remember how in a few short weeks, a few forum members started putting up their real pictures and that began spreading like wild flowers.  I was caught up in the movement as well.  It was also a joy to start learning the real names of some of my forum buddies and to see them use their real names in the forums (as I started doing).  This was a good thing and to those who suggest that people stop providing personal information, I say that is a step backwards.  Yes, it's probably safer.  But I don't think anyone is served by all us running back to the closet.

I also need to say that this isn't about being unfriendly and closed to newcomers.  I've never had an issue with the Poz and Aidsmeds merger, nor with all of the new folks the merger brought to the forums.  However, this issue isn't the same as the merger.  This issue is primarily about the forums now being connected to a large HIV negative population via a very popular tv series, that as Northernguy put so well, is watched by family, friends and coworkers.

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Formal complaint about the CSI connection
« Reply #54 on: February 17, 2007, 06:14:48 am »
I doubt a television show or its viewers are the problem here. Frankly, I don't even know what this show is or is about.

The problem seems to be that *some* folks are freaking about others finding out they are HIV positive. I can only wonder why if someone is that sensitive about someone finding out they would post anything on the Internet that would directly expose them. This totally baffles me, and borders on the paranoid.

That said, I agree with jkinatl2 that "anyone should reconsider offering up any information that could be used against them," and suggest that they should have done so all along. It’s only common sense.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Cliff

  • Member
  • Posts: 2,645
Re: Formal complaint about the CSI connection
« Reply #55 on: February 17, 2007, 08:34:45 am »
People who have issues with the recent developments ("freaking out" is a bit over-the-top), haven't deluded themselves into thinking that they were always posting in a Willy Wonka land, completely cutoff from the rest of the internet.  It's about risk.  The risk of being outed is greater, (or perceived to be greater), when the forums are connected with a show watched by millions.  I don't think those who keep rehashing the "this is the internet" line, get it.  The risk that you will run into someone you know, (who doesn't know your status and you prefer to keep it that way), isn't the same at every single website you visit on the internet.  This is because, (and here's my attempt at stating the obvious since it seems to be in vogue these days), not all 1.1 billion people using the internet go to the same website.  There was an unwritten contract and it changed overnight.  Some people have issues with that.  Others don't. 

But yes, this is a public forum.  Got it.  But for me, the issue is not about aidsmeds being on the internet.  It's about having the profile of this internet forum change overnight (and more importantly, without warning) and for others it's also about restrictive terms & conditions and the impact of those terms, now that the site is connected with a global media enterprise.

Is it paranoia?  Maybe.  But then again, I suppose you could say the same thing about anyone who chooses to hide their HIV status.

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Formal complaint about the CSI connection
« Reply #56 on: February 17, 2007, 08:58:31 am »
Speaking for myself, I’m a bit disturbed at people attacking the moderators and trying to dump the responsibility we all have for keeping up on changes in policy here, implied or otherwise, but that’s a different topic.

I wasn't suggesting some folks don't have reasons to keep their HIV status private, but I do question the reality of expecting visitors to one web site on the entire WORLD WIDE WEB being any real threat to anyone, or to even care. Perspective is in the eye of the beholder I guess.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Dachshund

  • Member
  • Posts: 6,058
Re: Formal complaint about the CSI connection
« Reply #57 on: February 17, 2007, 09:00:37 am »
I think people confuse being a member of this site with with being a guest. Since we are dealing with advertising I am reminded of the tag-line from a commercial, "membership has its privileges." Unless banned the only privilege we have is choosing to log on or not to log on. As guests you continue to be welcomed to the party as long as you are not too loud, too obnoxious or burn a hole in the carpet. For the most part we continue to be invited...cuz a party of one, just ain't much fun.



p.s. I think this has been one of the most civil discussions to date with no histrionics or attacks on moderators.
« Last Edit: February 17, 2007, 09:03:31 am by Dachshund »

Offline Peter Staley

  • Member
  • Posts: 1,338
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Formal complaint about the CSI connection
« Reply #58 on: February 17, 2007, 09:16:18 am »
This issue is primarily about the forums now being connected to a large HIV negative population via a very popular tv series, that as Northernguy put so well, is watched by family, friends and coworkers.

Cliff, how is this different from the even larger HIV negative population that finds these forums via search engines, and end up in our Am I Infected forum?  I can assure you, even this week, the folks that registered or just browsed as guests in the Am I forum were a far large group than the audience we got from the CSI show.  Sure, there's one big difference.  The Am I crowd found us on their own, while the CSI crowd was invited by us.  But it's still a comparison worth exploring, because if you feel the CSI crowd is a threat to these forums, then why wouldn't you also feel that the Am I crowd is a threat?  

I would even argue that the Am I crowd is more of a threat.  1) There are more of them (by far), and 2) many of them have a pathological fear of HIV, which might make them less sympathetic to those of us living with the virus than the average CSI viewer would be.  For instance, the Am I crowd has always had members that have ventured into the Living With forum, for whatever reasons (mostly out of a desperation to hear answers to the questions they feel aren't being answered).  We haven't had this problem at all with the CSI crowd.

So I ask you again, why hasn't anyone argued for the closing of the Am I forum because it's a threat to our so-called privacy?   There's no doubt we could make this a much safer place.  We could run it like the forums setup by a few folks we banned.  Their seemingly straits-only forum is closed, so you have to apply to get in.  Our software allows us to do the same.  

But of course, no one wants this, least of all me.  In a sense, it's the very openness of these forums that make them what they are.  A place where anonymous guests can browse for months until their comfort level allows them to post for the first time.

And people living with HIV HAVE found us via the CSI connection.  Plus, the CSI forum itself is kind of awesome -- a really great discussion, and a HUGE education for the show's writers and creator, let alone it's fans.

Peter

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 34,126
Re: Formal complaint about the CSI connection
« Reply #59 on: February 17, 2007, 09:29:11 am »
Cliff,  as I wrote previously I appreciate your comments about this issue and completely respect your feelings.

I agree that some earlier advance notice would absolutely have been a good idea. Unfortunately we here at AIDSMEDS actually didn't get much advance notice on this ourselves. And your specific concerns were ones that we discussed as well in the short time before the event occured. I suspect that in the future other "opportunities" will be considered more carefully before becoming a done deal.  

Because we have always taken care to protect this special part of the world we have created here at AIDSMEDS, I think it can sometimes give people a sense that we are impervious to the outside world. As you know, from time to time experiences like denialist invasion attempts have demonstrated how vulnerable we can actually be at times.

Personally, I can only repeat that Peter, Tim, Ann and I regard what we do here as a special trust. To that end, however imperfectly at times, we respectfully protect everyone here to the best of our ability. And always will. That's bedrock on this site.

The insights and maturity of the comments regulars have eloquently expressed both here and in the CSI section have made me feel very proud of who we are. I have found myself thinking  how well they have gotten to the heart of the issues. That's pretty terrific and it's just reminded me again of the respect and fondness which I feel for so many here.  

Right now there's this flurry going on about CSI. I hope and expect that when that settles down we will continue on with our basic mission which is to provide a safe and informative haven here, of which you are very much a part.

Cheers,
Andy Velez

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Formal complaint about the CSI connection
« Reply #60 on: February 17, 2007, 09:36:11 am »
For the record, I'm not one of the founders of this website - and by this website, I mean AIDSmeds.com, not the POZ.com portion. That's someone else's baby. Peter Staley founded this place in ... was it 1999 or 2000? I don't remember. I've been around since early 2001 (my god, nearly six years now!), so long my password has cobwebs on it. I consider myself just another member first and foremost, one who's taken on moderator duties because I believe in what this place is about and want to help make it work.

When we talk about making this place safe, we don't mean safe from the eyes of the general public. How could we accomplish that? We can't. What we're talking about is making this place safe from people attacking each other - which is no mean feat, I can tell you. We mean that we are going to keep snake-oil sales-persons and denialists from preying on people here. We mean we aren't going to let homophobes use this place to rant. We're not going to let people take advantage - as best we can.

There was a time when you didn't have to create an account to post here. If people think nasty comments fly around here now, you should have seen it back then. There was a time when nobody posted a photo, other than Peter, Tim and Andy. There was a time when people weren't warned and weren't banned. We've learned through trial and error what works and what doesn't. We're still learning, obviously.

Cliff hit the nail on the head when he said the perceived risk is what has changed. I fully admit this to be the case for me. We have always had visitors. There is a member here from the Am I forum who lives around the corner from me and yes, she did contact me. Thankfully she had nothing but supportive words for me, and I do realise it could have been different - but this happened over the summer, long before the CSI forum came about.

Is this more likely to happen now we are involved with CSI? That remains to be seen but on the evidence thus far, I don't think it's anything like what I had imagined. Yes, I was worried about this. I'm not worried about it now, from a personal perspective as well as a more general one. I AM still worried about people's whose perceived risk remains high. I know what it's like to feel that panic and I don't know how to make it better for those of you who are feeling that. I wish I did.

As for the advance warning, it is my understanding that this CSI forum thing came about rather quickly. Although it was a "done deal" when I found out a few days prior, there were contractual issues being tidied up, right up until moments before Peter finally posted the announcement. He posted as soon as he was able to and I'm sure he would have posted earlier if he could have.

In a way, Peter was in a "damned if you do, damned if you don't" position. If he turned CBS down they would have gone elsewhere and the point with this being if they went elsewhere, they probably wouldn't have had people feeling free to correct the holes and errors in the storyline. They wouldn't have heard the criticisms surrounding the transmission method. Here they're getting the real deal, from real people living with hiv. From an educational standpoint, they could not have found better. It's a pretty bold leap into the unknown for all of us, from Peter and S&S, on down to the newest member.

I see Peter has posted while I've been writing. He's got a very good point about the membership from the Am I forum - and actually ties in with some of my comments above.

I wish I knew how to reassure people that this CSI forum isn't having the effect that some (including me, in the beginning) have feared. They ARE staying in that part of the forum. When you think about it, who in their right mind is going to come over to this side and wade through all the THOUSANDS of posts to see if they know someone?

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline skeebo1969

  • Member
  • Posts: 5,931
Re: Formal complaint about the CSI connection
« Reply #61 on: February 17, 2007, 09:44:55 am »
Speaking for myself, I’m a bit disturbed at people attacking the moderators and trying to dump the responsibility we all have for keeping up on changes in policy here, implied or otherwise, but that’s a different topic.

  

  Daniel,

   When you figure out how the moderators are being attacked please start a thread stating the facts pointing to such things.  Like Cliff said and I totally agree, this is the internet and that much we do understand.  


  Peter,

    Why have we not wanted the Am I Infected forum closed?  Do you really think this is the same as having the CSI forum in place?  I can respect your argument, although  it disappoints me further that you draw this comparison.


    To everyone else who does "not give a fuck" or "does not care" who knows their status, I applaud you.  As a matter of fact I congratulate you and all I ask is understand not everyone shares your confort level.


   T
I despise the song Love is in the Air, you should too.

Offline ndrew

  • Member
  • Posts: 695
  • ....-.-.-.-.-.....
Re: Formal complaint about the CSI connection
« Reply #62 on: February 17, 2007, 09:46:53 am »
My formal complaint regarding CSI is that I don't care for it, especially that dreadful music, lighting and over-the-top edting and camera work.  CSI is like a desert flavored with sugar.  Media pollution, I refuse to let it infiltrate my life...

Drew

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: Formal complaint about the CSI connection
« Reply #63 on: February 17, 2007, 10:17:48 am »
My formal complaint regarding CSI is that I don't care for it, especially that dreadful music, lighting and over-the-top edting and camera work.  CSI is like a desert flavored with sugar.  Media pollution, I refuse to let it infiltrate my life...

Drew

Thank you!!  Well said.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline koi1

  • Member
  • Posts: 713
Re: Formal complaint about the CSI connection
« Reply #64 on: February 17, 2007, 10:19:04 am »
If we take into account what the benefits are of having the csi connection, then all of this will blow over. The number one benefit is that more awareness will come of it and in perhaps a very positive way.  Hopefully people coming here will know how to discen from T.V. and reality. This website will provide the dose of reality.

I can't tell you how many people are still unaware of the facts of HIV. I was igonrant of a lot of things before I tested positive. People need to know what our world is like, our struggles, our uncertainties, and even the how the practicalities of life are altered temporarily or forever.  They need to know the degrees of suffering we go through to get a good picture of what HIV/AIDS is like. Only public awareness will increase public sentiment for more research and the search for a cure. Yes I still believe our lives will improve.

Now if you post something that you are ashamed of, you should not be posting it in the first place. Remember that anyone can read it. And yes, you do increase your publicity by posting a real picture, giving very detailed personal information, which are not necessary to be considered a real person living with AIDS. Again if posting a pic is something you need,  and you don't work in a job where it matters, more power to you. But don't think that this the the "Joy Luck Club" and it never was an intimate place. Yes it is a place for HIV positive people, but so far cyberproof of serostatus is not a requirement to join.

rob
« Last Edit: February 17, 2007, 10:25:13 am by koi1 »
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Formal complaint about the CSI connection
« Reply #65 on: February 17, 2007, 10:22:31 am »
I AM still worried about people's whose perceived risk remains high. I know what it's like to feel that panic and I don't know how to make it better for those of you who are feeling that. I wish I did.

Me too, Ann. It's rather heartbreaking actually.

Drew, you crack me up! :D

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline manchesteruk

  • Member
  • Posts: 631
Re: Formal complaint about the CSI connection
« Reply #66 on: February 17, 2007, 10:27:01 am »
I just wanted to add I was always under the impression the Living With HIV forum was for well people living with HIV! I thought it was a support forum not a place to educate negative individuals.  Am I the only person who thought this?

Just want to apologise for this I completely misread what Peter had written and saw it as the Living Wth forum and not the Am I infected one, my mistake.
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline koi1

  • Member
  • Posts: 713
Re: Formal complaint about the CSI connection
« Reply #67 on: February 17, 2007, 10:30:55 am »
Hi Daniel,

I am also baffled by the people who think they can post a real picture and remain anonymous. I have not even posted one on any dating site, becuase of my job as a teacher. I have not posted where I work, my address, nor anything that would "give me away." This is not only compromising privacy but also dangerous, for many of us.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline koi1

  • Member
  • Posts: 713
Re: Formal complaint about the CSI connection
« Reply #68 on: February 17, 2007, 10:39:49 am »
And Yes, many of us who enjoy this website should instead be thanking those that make it possible instead of just offering negative comments. This website is a great idea, but it took vision and hard work to get it to where it is today. This is not PBS, and as far as I know it is free, yet bills have to be paid, and the money must come from somewhere. So what if a bit of commercialism and activism have to meld.  Where is this not the case? Mac cosmetics has donated 90 million dollar to AIDS research since 1994. They are still a commercial entity, but dont' you think the the money helped our cause?

rob
« Last Edit: February 17, 2007, 10:41:47 am by koi1 »
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Formal complaint about the CSI connection
« Reply #69 on: February 17, 2007, 10:40:31 am »
Hi Daniel,

I am also baffled by the people who think they can post a real picture and remain anonymous. I have not even posted one on any dating site, becuase of my job as a teacher. I have not posted where I work, my address, nor anything that would "give me away." This is not only compromising privacy but also dangerous, for many of us.

rob


Understood Rob. That was never the point I was getting at, but understood.

PS: I can see you through your computer screen you know. :o :-* ;)
« Last Edit: February 17, 2007, 10:42:19 am by DanielMark »
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline koi1

  • Member
  • Posts: 713
Re: Formal complaint about the CSI connection
« Reply #70 on: February 17, 2007, 10:43:46 am »
Oh, no let me put some clothes, on, nah, fuck it.

ror
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Formal complaint about the CSI connection
« Reply #71 on: February 17, 2007, 10:48:32 am »
Just don't tell my boyfriend okay? He might think I'm Gay or something. 8)
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline ACinKC

  • Member
  • Posts: 2,994
  • Bring it VIRUS! #2 Ranked In-crowd Member!
Re: Formal complaint about the CSI connection
« Reply #72 on: February 17, 2007, 11:07:59 am »
My predicition.  This too shall pass.  It will all blow over after May2nd.  If you dont like it then just wait until May 9th to let it all die out.  I also agree that this is the internet and it is all very public and it should stay that way.

Trust me people, this will blow over.
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline Peter Staley

  • Member
  • Posts: 1,338
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Formal complaint about the CSI connection
« Reply #73 on: February 17, 2007, 11:11:29 am »
   Why have we not wanted the Am I Infected forum closed?  Do you really think this is the same as having the CSI forum in place?  I can respect your argument, although  it disappoints me further that you draw this comparison.

T -- can you let me know a little bit more as to why the comparison "disappoints" you?  I realize no one is advocating for the closing of the Am I forum, but folks are very upset about the existence of the CSI forum.  I'm trying to point out, that from a privacy perspective, there's not much difference between the two.

Cheers,

Peter

Offline ACinKC

  • Member
  • Posts: 2,994
  • Bring it VIRUS! #2 Ranked In-crowd Member!
Re: Formal complaint about the CSI connection
« Reply #74 on: February 17, 2007, 11:16:28 am »
THIS is why Peter did it and I applaud the decision.  Look at the newly engaged, the 19 year old in ohio and others who just found out and appears they most likely found us due to the CSI partnership.

http://forums.poz.com/index.php?topic=8952.0

LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Formal complaint about the CSI connection
« Reply #75 on: February 17, 2007, 01:30:33 pm »
I'd like to clarify my thoughts on perceived risk of more guests reading this side of the forum and someone being found out as a result.

When I first heard about the CSI forum, I perceived it to be a potential problem where people's privacy etc to be concerned. I was VERY worried about this aspect of the project. So much so that I lost sleep over it.

However, now that I've seen it in action, and watched it from both a moderator's perspective as well as a member's perspective, I see that this concept is essentially a paper tiger. How to make others see this - I just don't know.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Cliff

  • Member
  • Posts: 2,645
Re: Formal complaint about the CSI connection
« Reply #76 on: February 17, 2007, 01:51:25 pm »
Peter,

I would say the difference in privacy concerns is both scope and the nature of the individuals who come here.  The folks in the AM I forum came here via searches on the internet due to exposure via (potentially embarrassing) sexual activity.  I see that being different from folks coming from CSI who may just casually go to the site.  Also, the scope is different.  There is the potential for far more people to come because of CSI than via normal internet searches.

For example, my dad watches CSI.  I have a bigger fear that he will find this website because of CSI, than he would from doing an internet search because of a potential exposure to HIV.

Also, I think some of this is related to forum member previously not having to think about how large the audience is, whereas now we do.  When I was a blogger, I never thought about how many people had access to the blogs or that the blogs were searchable on the internet.  I perceived the community as being small, even if in reality it wasn't.  I'm glad Ann picked up on my intentional use of the word "perceived."  I recognise that my fear isn't just about what is real.  It is also about the imaginary ones.  But the fears are there, regardless of the proportion of reality vs perception.

Cliff

P.S.- I am not advocating that the forums become more private.  I just think that privacy concerns should be given more weight when making big decisions like the CSI venture and that such decisions are appropriately communicated in advance (I understand the timing issues with the CSI matter).  Maybe even consultations with a couple of members to get their views would be nice, so that it feels a little more collaborative.  Would it have changed the decision Poz made?  Maybe not.  But I think I would have felt better having some of the explanations/information that I now have (via the responses from all the mods in this thread and from Reagan in the other thread) up front.

I agree with AC, this will pass.  I didn't mean for Peter to feel as though his back is up against the wall.  I just needed to say, publicly, how I felt about this (particularly since I knew a couple of buddies of mine were having some serious concerns but couldn't speak about it).  I now see that there was some internal debate on this and I can also see the potential opportunity that this can bring and so the various debates (in multiple threads) have been helpful.

Offline DingoBoi

  • Member
  • Posts: 1,355
  • Bailey's Infected Cream™ Served since 2004
Re: Formal complaint about the CSI connection
« Reply #77 on: February 17, 2007, 02:10:42 pm »
when i first started posting here, I was very shy.

Later I became emboldened and posted my picture, primarily based upon the concept the others wouldn't find out about me because they had no reason to visit this website.

Yes, it is a psuedo-anonymity and nothing can be gauranteed... but people do have a reasonable expectation that non-hiv or non-hiv worried people aren't visiting this site.

I am not out to my parents and I don't want them to know just yet.   Yes, I do understand posting a pic on the web is public, but there is also a REASONABLE EXPECTATION that somebody not iintrisically interested in HIV will ever visit this site.

Yes, I do have my vids on youtube which is where my 'friend' found me (lord knows why since she is a big ol lesbian but...)

The web is very public.  I agree with that.   But I also contend that it is so huge that most feel a reasonable expectation that we will not be outed, since most people do not visit an HIV website.

Now, with the CSI links, this site is REALLY PUBLIC and anyone who watches CSI, who has the faintest curiosity, can log in.  Education is great sure, but at what price to the people who do depend on this site for support?

If nothing else, couldn't you create a subdomain for the forums to discuss this?  That wasn't intrinsically linked to the rest of us?

My videos have gotten over 21000 hits through youtube.  Since I started posting here, I've gotten 2 comments from coworkers (in a company of 1800 in orlando) that they've seen my video.  I've also gotten a message from a friend in my hometown who came across it.

The web truly is huger than most imagine or perceive... protecting that idea should be paramount for a forum like this where people do spill all there thoughts and fears.

I knew what I was getting into potentially when I started my blog, but I never expected people to bring it up at work!  And this was when I was only do text blogs.

I expected my 'audience' to be the random masses and nobody who really 'knew' me would ever find it.

I was wrong and logically I know that thinking is wrong.. but based upon probability, it was right.

Now this CSI has introduced a huge, new factor into the probability of somebody being unwantingly outed.

PS:  The thread for the pictures of last year has been trashed temporarily pending the removal of the influx of CSI'ers.  I put that site together and did try to keep pictures out of the mainstream, but I couldn't be sure.  You put this thread in the mainstream and it was better to have it removed than let people view it.

It's sad.







Offline Peter Staley

  • Member
  • Posts: 1,338
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Formal complaint about the CSI connection
« Reply #78 on: February 17, 2007, 02:16:19 pm »
Thanks, Cliff.  This has been an educational thread for me, that's for sure.  You're making some really good points that I need to consider.

I still think the CSI viewers aren't as Joe Public as you fear.  The show ended with a less-than-five-second visual showing the knowhivaids.org URL, and telling folks to discuss "Stella's Story" with the writing staff (or words to that effect).  Once a viewer found the KNOW HIV/AIDS website (if they could remember it after it flashed by so quickly!), they then would have to click on the Stella's Story logo, which leads to the "letter from Zuiker" page.  Only on that page do they find a link that leads directly into our CSI forum.

I knew all of this up front (before agreeing to launch the CSI forum), and believed this would greatly limit who came here.  I thought we'd get two kinds of folks, with a risk of a 3rd kind:  1) rabid CSI fans that salivate at the idea of "talking" with the writing team about the plot and the show, 2) viewers who cared enough about HIV to discuss it online (the folks I wanted MOST of all), and 3) rightwing nuts who wanted to cause trouble (we've luckily gotten NONE of these).

But I felt strongly that the audience would be much smaller than the folks at CBS kept predicting.  And it turns out I was right.  We are still getting FAR MORE new members and guests in the Am I Infected forum than the CSI forum (if you average out the last few days of traffic).

So I still think the Am I forum remains a far higher threat to the privacy of our HIV+ members, but we've managed that risk very successfully through clear rules and heavy moderating methods.  We are doing the same with the CSI forum.

Peter

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Formal complaint about the CSI connection
« Reply #79 on: February 17, 2007, 02:18:54 pm »
But I think I would have felt better having some of the explanations/information that I now have (via the responses from all the mods in this thread and from Reagan in the other thread) up front.


Hi Cliff,

I couldn't have had much input "up front" because it took me a few days to get my head around the whole thing, and then more time to watch and see how it actually all panned out.

I saw your thread almost as soon as you posted, but I didn't reply until quite some time later. My initial post in this thread was one of the most difficult I've ever had to write here as I've had a lot of mixed feelings over the situation. I've sorted it all out in my head now though, and I'm feeling confident that our darkest fears will NOT come to pass.

It's gonna be ok and it's gonna eventually blow over.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: Formal complaint about the CSI connection
« Reply #80 on: February 17, 2007, 02:32:15 pm »
THIS is why Peter did it and I applaud the decision.  Look at the newly engaged, the 19 year old in ohio and others who just found out and appears they most likely found us due to the CSI partnership.

http://forums.poz.com/index.php?topic=8952.0



for me, this risk clif expresses (validly) is outweighed by things like apollo's posting.   I spent several days recently consoling an eighteen year old boy about becoming hiv+.  It literally brings tears to my eyes to think about someone so young having to face this.     I think this is the reason why I spend a lot of time on the "I just tested poz" forum.   

I was weighing some of the pros and cons about this issue.  I could care less about CSI etc.  But, reading about a 19 year old, and reading his posting has basically made the decision for me.  It's worth the risk.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Formal complaint about the CSI connection
« Reply #81 on: February 17, 2007, 02:42:58 pm »
I was weighing some of the pros and cons about this issue.  I could care less about CSI etc.  But, reading about a 19 year old, and reading his posting has basically made the decision for me.  It's worth the risk.

Puck, that's essentially the same conclusion I've come to. The risk is proving to be MUCH less than I had anticipated and the benefits definitely outweigh.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline NycJoe

  • Member
  • Posts: 252
Re: Formal complaint about the CSI connection
« Reply #82 on: February 17, 2007, 02:54:31 pm »
I totally agree.  The benefits FAR outweigh anything else.  I hope many people come to this website to learn and benefit from it.  Isn't that what this website is about?  Kudos to Peter and moderators for doing a hard and thankless job.  I'm glad their are people out there like you who care enough to devote your time and energy to a site such as this that we are all guests of. 

Offline AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Formal complaint about the CSI connection
« Reply #83 on: February 17, 2007, 04:11:39 pm »
Puck, that's essentially the same conclusion I've come to. The risk is proving to be MUCH less than I had anticipated and the benefits definitely outweigh.

Ann


I went through a similar ordeal like this when I helped to start a group.   Although it was a slightly different situation the premise was similar.  Privacy was the topic at hand.   Although I wasn't the moderator I'd helped start the group and the majority of it's members were there because I mistakenly trusted the other moderator.   There were a few people complaining about privacy and such.   Well, in a bad judgement call moderator decided to make the group "hidden."    I had argued against doing that from the beginning because it was obvious that no newly diagnosed people or anyone needing help would be able to find the group.

That moderator and I parted ways.  I started my own group which although private could be found by those looking.   Her group has failed miserably left only with a rag tag full of misfits and turned into a dysfunctional mess.   It was never about whether I was right or wrong, but to me it was a matter of what was right for everyone with HIV or AIDS.   

Most definitely the benefits outweigh the risks!   I hope this example helps illustrate that!

Many of you have argued issues of privacy and concerns of disclosure.   No one here is outing you.   Only you can do that and if you take risks by posting personal information on the internet whether it's this site or gay.com or any number of others you are jeapordizing your own privacy.   If you don't want your status disclosed choose not to have a picture and don't give out your full name.   

To me, even if just one person finds this site and finds help that's the most important issue at hand.   Throwing stones at the moderators and others by taking their response out of context for your own reasons isn't going to benefit anyone searching for help here.   And, I realize I've done some of this too.   If I've offended anyone I appologize!



« Last Edit: February 17, 2007, 04:42:21 pm by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline gerry

  • Member
  • Posts: 522
  • Joined AM Feb 2003
Re: Formal complaint about the CSI connection
« Reply #84 on: February 18, 2007, 02:25:48 am »

I saw your thread almost as soon as you posted, but I didn't reply until quite some time later. My initial post in this thread was one of the most difficult I've ever had to write here as I've had a lot of mixed feelings over the situation. I've sorted it all out in my head now though, and I'm feeling confident that our darkest fears will NOT come to pass.


Hi Ann,

I sincerely hope you are right about the darkest fears not coming to pass.  My concern is not so much now how the increased traffic is impacting the order in the forums as the mods have been ready to take on this task, but more so about the members who have chosen to remain silent and away from the radar screen amidst all these because of the perceived risks.  Hopefully, this is just a temporary thing, but who knows?  Many of these good folks would probably not even attempt to speak up in their defense at this juncture.  We should respect their individual decisions without labeling these a sad state of affairs and try to avoid alienating them even further at a time they are already feeling quite vulnerable (this is not specifically referring to any of your posts, but just the general feel of what some have said here). 

Hi Peter, Tim, Andy and Ann

There is one thing I am confused about.  I seem to be getting some mixed signals from the mods with some saying that this experiment will eventually blow over, after which the forums should revert back to business as usual, while other mods seem to imply that collaborations such as this one would be the right vehicle to get aidsmeds.com more exposure.  I guess I'd want some clarification regarding this in terms of which direction aidsmeds is heading.  Am I reading this wrong?  Or is it too early to tell? 

Gerry


Offline joemutt

  • Member
  • Posts: 1,167
Re: Formal complaint about the CSI connection
« Reply #85 on: February 18, 2007, 03:36:38 am »
Off course, pushing us back into silence will (further or re-) stigmatise us, but it's the world wide web so I think it has always been a given that anyone can see and read this site. What I'm not so comfortable with is that our own words no longer seem to  belong to us  once we put them down here, and that the opportunity to delete our postings has been taken away from us recently  (no edits more than 48 hours after posting), like that Zuiker guy making a book with the 'best of aidsmeds' with contributions from this site, ok, should have read the fine print of the General Conditions of Use, but I feel that really stinks.  >:(
(not that I wd stand a fat chance to be anthologised  ;))
« Last Edit: February 18, 2007, 03:38:20 am by joemutt »

Offline Peter Staley

  • Member
  • Posts: 1,338
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Formal complaint about the CSI connection
« Reply #86 on: February 18, 2007, 08:37:44 am »
Hi Peter, Tim, Andy and Ann

There is one thing I am confused about.  I seem to be getting some mixed signals from the mods with some saying that this experiment will eventually blow over, after which the forums should revert back to business as usual, while other mods seem to imply that collaborations such as this one would be the right vehicle to get aidsmeds.com more exposure.  I guess I'd want some clarification regarding this in terms of which direction aidsmeds is heading.  Am I reading this wrong?  Or is it too early to tell? 

Gerry -- it's way too early to tell.  I hadn't even conceived of a collaboration like the one that's occurred -- they came to us, at the last moment, and my gut call on agreeing to it was because I felt there was lots of upside, and the potential downsides could be managed.  We're going to have to let this play out to give it a fair assessment after it dies down.  That will largely determine if we ever do anything like this again.

Peter

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Formal complaint about the CSI connection
« Reply #87 on: February 18, 2007, 08:48:44 am »
like that Zuiker guy making a book with the 'best of aidsmeds' with contributions from this site,

Joe,

The ONLY forum that Zuiker can use words from is the CSI forum. He absolutely CANNOT use anything written anywhere else on this website. If you don't want to chance Zuiker or CBS using your words, don't post in the CSI forum. It's that simple.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Formal complaint about the CSI connection
« Reply #88 on: February 18, 2007, 08:55:12 am »
Hi Ann,

I sincerely hope you are right about the darkest fears not coming to pass.  My concern is not so much now how the increased traffic is impacting the order in the forums as the mods have been ready to take on this task, but more so about the members who have chosen to remain silent and away from the radar screen amidst all these because of the perceived risks.  Hopefully, this is just a temporary thing, but who knows?  Many of these good folks would probably not even attempt to speak up in their defense at this juncture.  We should respect their individual decisions without labeling these a sad state of affairs and try to avoid alienating them even further at a time they are already feeling quite vulnerable (this is not specifically referring to any of your posts, but just the general feel of what some have said here). 

Gerry



Gerry,

I'm a bit dismayed that you chose to include the portion of your post I quoted in bold with your comments directed at me. I have done my utmost to try and convey the fact that yes, I do understand completely how some people are feeling and that includes the posters who are remaining silent at this time. Do you seriously think you are the only one these people have contacted privately? I fully respect their decisions.

And I have never labeled these decisions a "sad state of affairs". I feel badly that some are feeling vulnerable and I can't stress that enough. I wish I know how to make it better for them, as I have previously stated. One of the reasons I had such a difficult time making that first post is because I knew I needed to chose my words carefully to avoid inadvertently alienating anyone.

You may have added a disclaimer that you weren't specifically referring to any of my posts, but what's a person to think when you add those words to a post directed at me?

Ann
« Last Edit: February 18, 2007, 08:56:45 am by Ann »
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Catman

  • Member
  • Posts: 419
  • Blessed with more than 9 lives! + since 1986
    • Who is the Catman?
Re: Formal complaint about the CSI connection
« Reply #89 on: February 18, 2007, 09:06:50 am »
I agree with Cliff. This forum should have been kept "low" on the non-positive radar. As for myself, I'm not posting as frequently and much less posting pics that were once shared with others because we HAD trusted this site.

Ann- I do trust YOU, thanks for reassuring us that things will not get out of hand, but still...I'm not quite as comfortable as before...
« Last Edit: February 18, 2007, 09:30:41 am by Catman »
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline Tucsonwoody

  • Member
  • Posts: 396
Re: Formal complaint about the CSI connection
« Reply #90 on: February 18, 2007, 10:49:43 am »
While there are disclaimers about the ability of the CSI folks to only use anything posted in the CSI forum, I think something that makes some people nervous are questions like these from the Zuiker interview:

"Are you going to participate in the Forums?"

"What will you do with the content of the Forums?"  "I think about me publishing those and putting that on the marketplace...."

This implies more than one forum doesn't it? And it seems to me most of the stories about people living and dying with HIV/AIDS are in forums other than the CIS one.  And while the plan today is not to let them be used by CSI...no one can say what decision will be made down the road for CSI or the next thing that will come along. Right?

So for me, regardless of what legal rights to privacy we give away by posting here and knowing full well how the internet is public, I'd have to say that whatever benefit has been derived from the CSI exposure does not outweight the turmoil and division it has caused among us. The people who have concerns are pitted against those that do not and that will have lasting effects beyond the CSI run.

It's just a mess.......
And I wished for guidance, and I wished for peace
I could see the lightning; somewhere in the east
And I wished for affection, and I wished for calm
As I lay there - Nervous in the light of dawn

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: Formal complaint about the CSI connection
« Reply #91 on: February 18, 2007, 11:23:45 am »
What I'm not so comfortable with is that our own words no longer seem to  belong to us  once we put them down here, and that the opportunity to delete our postings has been taken away from us recently  (no edits more than 48 hours after posting),

When I sit in a room with you and have a discussion, can you erase anything you say?  Why should a web forum on the internet be any different?  I do not understand this argument people are trying to make.

If people have issues with HIV disclosure, which I think is the main concern, they should be careful with what they say of a personally identifiable nature ANYWAY, and they should not be posting sexy photos of themselves ANYWAY, etc. etc. -- I just don't get it.  Sorry.

I realize that in these situations we can make an error in judgement, and if there is some wildly dangerous situation that the moderators, upon request, would make some allowances.  I think though that the non-edit feature is a sound idea for following any sort of linear type discussion.  And like Ann stated either in this thread or another one, I would have suggested a shorter time frame than 48 hours.  I think she suggested six hours, and I think that is more than generous amount of time to correct spelling and grammatical errors, and the odd circumstance when you say something totally inflammatory that should be, upon reconsideration, retracted.

There have been REPEATED instances where, in any given thread, a poster makes a comment, it's replied to without quote functions in the subsequent post, and then days later is edited ruining the entire thread and making someone else look like some sort of dementia sufferer.  This does not occur in the real world, this sort of revisionism of discussion, and I see no reason it should occur here.

The bottom line is that a certain part of our posting members had some sort of naive false illusions of privacy on the internet that does not, and has never, existed.
« Last Edit: February 18, 2007, 11:27:45 am by philly267 »
"I’ve slept with enough men to know that I’m not gay"

Offline gerry

  • Member
  • Posts: 522
  • Joined AM Feb 2003
Re: Formal complaint about the CSI connection
« Reply #92 on: February 18, 2007, 11:35:03 am »
Gerry,

I'm a bit dismayed that you chose to include the portion of your post I quoted in bold with your comments directed at me. I have done my utmost to try and convey the fact that yes, I do understand completely how some people are feeling and that includes the posters who are remaining silent at this time. Do you seriously think you are the only one these people have contacted privately? I fully respect their decisions.

And I have never labeled these decisions a "sad state of affairs". I feel badly that some are feeling vulnerable and I can't stress that enough. I wish I know how to make it better for them, as I have previously stated. One of the reasons I had such a difficult time making that first post is because I knew I needed to chose my words carefully to avoid inadvertently alienating anyone.

You may have added a disclaimer that you weren't specifically referring to any of my posts, but what's a person to think when you add those words to a post directed at me?

Ann


I apologize, Ann, because I really was not addressing that part to you.  Looking back at how I wrote it, I should have completely separated that part instead of just writing the additional clarification in parenthesis.  I appreciate how this turn of events has been very difficult for you as you have articulated in your posts, and I do know that people have confided in you privately who had otherwise remained cyber-silent about this topic at all ever since the event unfolded, and that's part of what's tearing you apart about this entire situation. 

And no, you never said or insinuated that this decision is a "sad state of affairs," again I apologize for adding this part to the message that I addressed to you.  In fact, that statement was not about the decision to do the CSI link at all but about some people's reactions to other people's reactions.  This was supposed to be addressed to those who keep "reminding" people who have reacted negatively to this entire turn of events that it is essentially their fault for letting their guard down and posting details about themselves that they should never have posted in the first place if they didn't want those details stumbled upon by accident in a public forum.  (They already get that.)  And likewise, by retracting from it or responding negatively to it, that it somehow makes them "lesser persons" by doing so in the grand scheme of furthering the "cause" of advancing HIV awareness.  I know that you appreciate the fact that turning completely public under these circumstances is a very personal choice (again, another reason why this is tearing you apart because it could backfire with those who are not ready to do this, who have found support here and are now struggling with the possibility of leaving it behind).  Again, that "sad state of affairs" comment was not directed at you, but I am getting this vibe from what others have posted here and in other threads.

I might not be making myself any clearer even after this clarification.  If not, I'll just go back to my initial sentence to reiterate that the statement was not intended for you.

Gerry

Offline AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Formal complaint about the CSI connection
« Reply #93 on: February 18, 2007, 11:41:38 am »
When I sit in a room with you and have a discussion, can you erase anything you say?  Why should a web forum on the internet be any different?  I do not understand this argument people are trying to make.

If people have issues with HIV disclosure, which I think is the main concern, they should be careful with what they say of a personally identifiable nature ANYWAY, and they should not be posting sexy photos of themselves ANYWAY, etc. etc. -- I just don't get it.  Sorry.

I realize that in these situations we can make an error in judgement, and if there is some wildly dangerous situation that the moderators, upon request, would make some allowances.  I think though that the non-edit feature is a sound idea for following any sort of linear type discussion.  And like Ann stated either in this thread or another one, I would have suggested a shorter time frame than 48 hours.  I think she suggested six hours, and I think that is more than generous amount of time to correct spelling and grammatical errors, and the odd circumstance when you say something totally inflammatory that should be, upon reconsideration, retracted.

There have been REPEATED instances where, in any given thread, a poster makes a comment, it's replied to without quote functions in the subsequent post, and then days later is edited ruining the entire thread and making someone else look like some sort of dementia sufferer.  This does not occur in the real world, this sort of revisionism of discussion, and I see no reason it should occur here.

The bottom line is that a certain part of our posting members had some sort of naive false illusions of privacy on the internet that does not, and has never, existed.

Very well said Philly!   I agree with all of your points wholeheartedly!

To add to it I think some people have a fear of others outing them!   I just want to state here for the record I have run across people I know or recognize on her occasionally.   Just because I don't care if anyone knows I'm HIV+ doesn't mean I would ever out someone.   I would NEVER do that because I know that is a breach of privacy.

But, others will.   There are always the gossip queens who will out you in a drunken stupor at some club, maybe even at work.   The real concern of discloser lies within and isn't coming from external dark forces.

So, as we continue to beat this horse to death I think it's important that all realize that if you are sharing specific details and photos that can identify you, you only run the risk of outing yourself.   

If you want to share a particular experience you don't need to mention the name of club you went to or where you live or work which ironically those arguing most for this have revealed over in over while they continue to reignite the flames of mass hysteria!

Again, whether it's this site or another, use common sense!
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: Formal complaint about the CSI connection
« Reply #94 on: February 18, 2007, 12:05:08 pm »
Very well said Philly!   I agree with all of your points wholeheartedly!

To add to it I think some people have a fear of others outing them!   I just want to state here for the record I have run across people I know or recognize on her occasionally.   Just because I don't care if anyone knows I'm HIV+ doesn't mean I would ever out someone.   I would NEVER do that because I know that is a breach of privacy.

But, others will.   There are always the gossip queens who will out you in a drunken stupor at some club, maybe even at work.   The real concern of discloser lies within and isn't coming from external dark forces.

So, as we continue to beat this horse to death I think it's important that all realize that if you are sharing specific details and photos that can identify you, you only run the risk of outing yourself.  

If you want to share a particular experience you don't need to mention the name of club you went to or where you live or work which ironically those arguing most for this have revealed over in over while they continue to reignite the flames of mass hysteria!

Again, whether it's this site or another, use common sense!

Yeah, it's really no different than the pre-internet days.  If you were in the closet and you decided to go make a foray in the gay bookstore or peep show booth, there was the slight chance that you'd run into your 3rd cousin once removed right in front of the place.  The same situation exists here, it's just a matter of what degree of risk one wishes to take.  I mean *HELLO* why do you think there are always so many "Guests" reading the forums.  One you make the decision to register you've committed to and endless amount of choices of how much of yourself to share depending on your personal disclosure situation.

I'm just glad I don't deal with it anymore.  But surely, I understand the concerns.  I just want people to be honest about where they are with this and what the realities of the internet are.  Basically people have an incorrect view of the internet... like because you sit alone in a room at home staring at your screen that it equals some level of privacy.  It's very illusory.

Oh, and haven't we all gossiped when drunk? :)
"I’ve slept with enough men to know that I’m not gay"

Offline AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Formal complaint about the CSI connection
« Reply #95 on: February 18, 2007, 12:30:19 pm »
LOL, at the last comment Philly. 

I wonder do these people so afraid leave thier home ever?   I mean I think you've brought up a good point Philly.   We all run the "risk" of being outed when we're at doctors appointments or at an ASO.   You think those people don't talk?

Some of the worst cases I've seen have come from HIV counselors themselves.   

Actually, one of the ASO's here locally had to shut down it's support program recently due to 2 of the members as I understand it going out and talkin smack about em at the clubs.   I've never been to that one, but it sounds like a mess still. 

What about AA and NA meetings?  Those groups don't make you sign a waiver in case some author decides to sneak in and do a tell all?

To me this issue of internet fear is all avoidable by taking the most basic steps to protect your privacy, but what ya gona do in the real world?   Continue to live in fear and hide?

Personally, I'm not gona let that fear control me.  I realize we are all at different stages with the disclosure issue.   For me, it was very liberating.

I fail to see the CSI forum as a real threat (provided common sense is used).    I don't know maybe people been reading too many John Grisham novels or something!






Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Cliff

  • Member
  • Posts: 2,645
Re: Formal complaint about the CSI connection
« Reply #96 on: February 18, 2007, 12:45:34 pm »
Wesley & Philly,

You guys don't get it and I doubt anyone could restate the issues in such a manner to help you understand what our concerns are.  Your comments aren't helpful.  In fact, they are down right condesending and silly. 

Everyone here knows this is the internet (and if we didn't, you guys repeating it in every single message certainly would have made that obvious fact clear by now). 

And we definitely don't need you to dramatize our valid concerns into something completely over-the-top, (hint: your "I wonder do these people so afraid leave their home ever" comment is out-of-line).

You two have no intentions of discussing this issue intelligently and respectfully.  You're just here to kick up dirt.  You don't get it!  okay.  Just accept it and stop trying to "help."  Cause you're not.

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: Formal complaint about the CSI connection
« Reply #97 on: February 18, 2007, 12:56:26 pm »
Cliff, I don't see any of my comments as being condescending, thought the one you selected belonged to Wesley and I can see how that one was condescending.  I think my views as expressed are quite realistic, and they basically apply to people on the board that have expressed some sort of surprise that they posted pictures on threads like the "Porn" one in Off Topic showing their face, yet they're hyper-sensitive about either gay or HIV disclosure.  I've simply stated that I don't comprehend doing such a thing, and tried to state some examples pre-dating the internet when I was concerned with disclosure issues and the types of personal negotiation that must be considered individually.  Obviously some people here NEED to be reminded of the open sense of the internet.

It's a shame that you need to label a view contrary to yours as condescending.  If you could point out a particular example of where I have done this I will be more than happy to apologize.  I have TWO posts in this thread that you have authored, and I see no particularly "kicking up dirt" commentary in my posts. 
"I’ve slept with enough men to know that I’m not gay"

Offline RAB

  • Member
  • Posts: 1,895
  • Joined March 2003
Re: Formal complaint about the CSI connection
« Reply #98 on: February 18, 2007, 01:02:09 pm »
Ann

(with apology for the temporary hijack)

However this plays out, I am certain that those members who have remained silent and are feeling very anxious and confused, have found your heartfelt words of understanding and empathy to be the most calming of anything that has been said.

I've watched these past few days how many hours you've been logged in, I've read every word you've written.

You lady have been an absolute trooper.  I don't know how or why you continue to give so freely of youself, but I do know one thing, that gift makes these forums a better place.

Thank you.

RAB


(we now rejoin our topic at hand)

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: Formal complaint about the CSI connection
« Reply #99 on: February 18, 2007, 01:02:51 pm »
So, as we continue to beat this horse to death ....
   You mean it's not dead yet?  I was just about to take stock out in Elmer's.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

 


Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.